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We are proud to be the official media partner for #UniteForParkinsons. Make sure to keep checking back in the lead-up to World Parkinson’s Day on 11 April to stay up to date with all the latest campaign news.

I'd like more studies to be carried out that focus on gender in Parkinson's and the differences regarding progression of the condition

Susanna Lindvall

Interviews

Author: Almaz OhenePublished: 8 March 2018

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On International Women’s Day, Susanna Lindvall, vice president of the European Parkinson’s Disease Association (EPDA), shares her hopes for #UniteForParkinsons 2018 – and explains why more female-focused research into Parkinson’s is essential

Today is International Women’s Day and we’re also only a few weeks away from World Parkinson’s Day, which is when the #UniteForParkinsons campaign hopes to hit new heights. Tell us about the campaign and how the EPDA is getting involved.

We have been working very hard for the past few months generating support and interest from all of our global network. Our aim is for Parkinson’s organisations and supporters around the world to be inspired to come together on a bigger scale than ever to show what Parkinson’s truly is.

At the EPDA, we believe this will only actually happen if we start working together as an international community in a real and tangible way. That’s what World Parkinson’s Day is all about and that’s why we created the #UniteForParkinsons campaign with Parkinson’s UK last year.

So, can you tell us about your role at the EPDA and describe your typical day as a board member?

I am very interested in research, so on a typical day I begin by answering email questions relating to Parkinson’s studies and research. I have telephone conference meetings with pharmaceutical companies and I’m in contact with Parkinson’s professionals throughout Europe. I also do some writing for the Swedish Parkinson’s magazine.

What changes to Parkinson’s diagnosis and treatment have you seen during your time working within the sector?

If we look at the diagnosis process, nowadays there are studies ongoing in biomarkers providing early diagnosis including imaging techniques, cerebral spinal fluid analysis and changes in the retina in the eyes.

In terms of treatment, I am very happy that clinicians recognise that a lot of younger people can have Parkinson’s. I am also glad that non-motor symptoms such as anxiety, depression and physical pain are also a recognised part of the disease.

We now have a wide range of drugs and treatments such as oral drugs, deep brain stimulation, medication patches and intestinal gels for continuous intestinal administration, and neurologists have begun to see the importance of exercise in slowing the progression of the disease.

What are your hopes for Parkinson’s treatments in the next few years? And in the long term?

I’d like more studies to be carried out that focus on gender in Parkinson’s disease and the differences regarding progression of the condition. The gender-specific approach is very important and it’s necessary to pay special attention to the predictors that cause poor health and poor quality of life. At present, we don’t have a general understanding of the differences.

In many Parkinson’s studies, there aren’t any women included in the data. I think we need many more women participating so that we can learn how the progression of the disease in women compares with that in men. We will then also learn how Parkinson’s medications affect women’s and men’s bodies differently.

What are you most excited about in terms of Parkinson’s developments: will we see a cure in your lifetime?

My hopes regarding treatments in the next five years are that we will find ways to detect the condition in its very early stages. At the same time, we need neuroprotective drugs. A combination of these two factors would be great.

My mother had Parkinson’s, and my father was a doctor who took care of my mother for several years. Then gradually I got more and more involved in her care and treatment. Another close family member who had Parkinson’s for several years suffered from hallucinations. He was living alone and did not dare to go into the bedroom to change clothes and go to bed in the evening, because he thought he was seeing people in there listening to him. This went on for a long time before we realised what was happening. When we finally found out, we took him to the neurologist to change his medication. Everything became much better for him after that.

Is there an experience you’ve had with Parkinson’s, either personally or professionally, that has given you hope?

Yes, for me research gives me hope. Because if you are looking at the exponential increase in the amount of research being carried out, all the ongoing studies and publications, for me it says that it has to result in a major breakthrough. When I see healthcare professionals and people with Parkinson’s share positive experiences and good models of care that improve quality of life – which is of vital importance – this also gives me hope.

What do you hope the campaign will achieve this year and in the future?

We really need the international Parkinson’s community – and by that I mean individuals, families, charities, healthcare professionals, decision makers and commercial companies from all over the world – supporting #UniteForParkinsons and getting involved. Last year it was a hashtag, this year it’s the hashtag and videos. Next year, who knows? What I do know is that from an EPDA perspective, we can’t make change happen on our own. But if we work together, then in theory anything is possible. And that’s what the #UniteForParkinsons campaign is all about.

About Susanna

Susanna has been the vice-president of the European Parkinson’s Disease Association (EPDA) since 2005. She was born in Romania but has lived in Sweden since 1962, where she gained a BSc in organic chemistry from the University of Stockholm. From 1996 to 2002 she was president of ParkinsonFörbundet, the Swedish Parkinson’s Disease Association (SPA). She worked for many years as an information specialist at dairy company Arla Foods until her retirement in 2010.

The EPDA and Parkinson’s UK are running the #UniteForParkinsons campaign to coincide with World Parkinson’s Day on 11 April. Get involved on the day by making your own Parkinson’s video and sharing it on social media using the hashtag. For more information, visit the website. Campaign toolkits are available to download in English, French, German, Italian, Spanish and Welsh. A Dutch version will also soon be available.

Share this story

We are proud to be the official media partner for #UniteForParkinsons. Make sure to keep checking back in the lead-up to World Parkinson’s Day on 11 April to stay up to date with all the latest campaign news.

I'd like more studies to be carried out that focus on gender in Parkinson's and the differences regarding progression of the condition

IN THE NEWS

A study published in the ‘Journal of Clinical Investigation’ has suggested mechanisms that lead to Parkinson’s in adulthood, may begin much earlier than previously thought. The study, carried out by Northwestern University, Illinois, US, researched movement disorder spinocerebellar ataxia type 1 by genetically engineering a mouse to mirror the human disease. Researchers found that altering circuity in the cerebellum – an area of the brain that controls movements – set the stage for later susceptibility to neurological disease. Professor Puneet Opal, who worked on the study, said: “This is the first discovery of alterations in an adult-onset spinocerebellar disorder that stems from such early developmental processes. “This may well be generalisable to a whole host of other diseases, including Alzheimer’s disease, Huntington’s disease, Parkinson’s disease and amyotrophic lateral sclerosis.”

Global Kinetics receives vital funding

Australian-based health company Global Kinetics has received a $AUS 7.75 million investment from the Australian Federal Government’s Biomedical Translation Fund. The investment will be used to commercialise its Parkinson’s KinetiGraph – a smartwatch-style device that continually tracks the involuntary movements of those living with the condition. In addition to the sum from the Australian government, Global Kinetics also announced they are to receive a grant from The Michael J Fox Foundation, Shake It Up Australia Foundation and Parkinson’s Victoria. Mark Frasier, senior vice president of research programmes at The Michael J Fox Foundation, said: “The experience of Parkinson’s varies day-to-day, hour-to-hour. An objective tool, such as the wearable PKG technology, that passively collects data on the experience of Parkinson’s disease could give patients and their doctors greater insight to calibrate treatment plans and improve outcomes.”

Smartphone app detects severity of Parkinson’s symptoms

A smartphone app– created by researchers from Johns Hopkins University, the University of Rochester Medical Centre and Aston University – can detect the severity of symptoms in people with Parkinson’s, according to a recent study. The study, which appeared in medical journal ‘JAMA’, found that the HopkinsPD app generated severity score levels which strongly correlated with standard movement tests given by physicians. HopkinsPD is expected to help medical professionals analyse Parkinson’s symptoms. Dr Ray Dorsey, neurologist at the University of Rochester, said: “Until these types of studies, we had very limited data on how people function on Saturdays and Sundays because patients don’t come to the clinic. “We also had very limited data about how people with Parkinson’s do at two o’clock in the morning or 11 o’clock at night because, unless they’re hospitalised, they’re generally not being seen in clinics at those times.”